"Significant" Family History

Girl53

Ladies: Newly diagnosed and head spinning. Talked to my internist on phone last night, and she immediately mentioned PBM. Have read materials with opinions ranging from LCIS is no big deal all the way to "ticking time bomb." Immediate question in my mind: Is my family history significant enough that, coupled with LCIS, I am at very high risk? Here it is:

Mother diagnosed at age 52; paternal grandmother diagnosed in her mid 60s (and died of disease); three great aunts and a cousin on my father's side (one died before age 40); one maternal cousin diagnosed between ages 40-50; and one maternal cousin with ovarian cancer. Does this warrant BRCA test? Even if test negative, does this still sound significant? Not a topic I really want to be discussing on a sunny Saturday afternoon

MelissaDallas

Only a genetics counselor can really answer that. I highly recommend a session with one because BRCA is not the only significant gene. Even though your mom had cancer the fact that she developed it after 50 is not as concerning as if she had been in her 30s. Even if she were BRCA positive you only stand a 50% chance of inheriting the gene.I'm surprised your doc is going there immediately regarding PBM because that is most definitely not the NCI recommendation without a lot more info. The majority of women with LCIS do not go on to develop cancer.

sas-schatzi

kayb, I went to the link. Followed lots of links within the link. Lots of dead ends. They say they have been a nonprofit for 15 years, but never came across a 501c3 designation. Looked for specifics like where the money's gone, list of Board of Directors names. Too many requests for donations. Red flag for me. Next logical thing is to check Charity Navigator. I know you know well that a charitable organization can't be eval'd until they have a 5 year hx. Plus, they can decide they don't want too.  Reason I put this here is maybe someone else will do the CN review. I'm developing a short attention span.

Anonymous

when considering family history, they are mainly concerned with first degree relatives (your mother); less so with aunts, cousins, grandmothers; although they do factor in somewhat. (and the ovarian cancer and the young ages too: having the BRCA test would probably be a good idea). I was diagnosed with LCIS 12 years ago and my risk is further elevated by my mom's history of bc (ILC), my new oncologist is not overly concerned about my risk (although my previous 2 said it was about 35%), but wants me to be tested, so I will have genetic testing done in Sept. I took tamoxifen for 5 years, I have now been on evista for about 6 years, and I continue with high risk surviellance of alternating mammos and MRIs every 6 months. (fortunately, I haven't required any further biopsies or lumpectomies in all these years; if I were to have more suspicious finding, I would certainly reconsider the options of PBMs.) The thing with LCIS is that there is NO need to rush your decisions, since it is non-invasive, you can take your time researching, talking to others, getting 2nd opionions if you choose, and just giving it time to sink in. Was your diagnosis from a stereotactic core biopsy or a follow-up excisional biopsy? Please feel free to ask any questions you think of. It can be overwhelming at first, so come here for support.

anne

MsVeryDenseBreasts

awb, how much longer do they want to keep you on hormone therapy since it's already been more than 10 yrs (combined)? What are the docs saying about the amount of time you should be able to expect for risk reduction benefit for your endurance on these drugs? That's another hazy area for me when I look at the peer review literature. Last time I looked it seemed like more speculation than clinical proof. I seem to recall you have stated that you haven't had bad SEs with either drug, is that correct? Thx.

Girl53

Melissa, Kay, Awb: Thank you so much for your replies; I feel better already. My internist is wonderful but tends to take a very conservative approach to things, and I guess this is no exception. Definitely need more time to let this sink in, and calm down. It's so tempting to want to do or decide something quickly to get past uncertainty.

Recent mammogram showed clustered microcalcs but no other abnormalities. Had core needle/stereotactic biopsy, resulting in LCIS/ALH dx. Will see BS Aug. 24 for consult and to arrange excisional biopsy. Am scared about possible upgrade to DCIS or something else. And have read about side effects of Tamoxifen. I never tolerated birth control pill and have some eye issues that might contraindicate.

Maybe the biggest factor for me is that I had a fantastic husband who struggled through, and then died of, a brain tumor. We were on a rollercoaster of anxiety for 14 years. Am blessed to be happily remarried to a great guy, and don't want to face spectre of constant fear of cancer. Am getting ahead of myself!

Will take your good counsel and not rush. And am taking care of myself: Today I had beautiful smoothie with spinach, kale, green grapes, fresh lime juice, and a fat, luscious mango. (Then had two cold beers at a family party....maybe cut this back LOL?)

Girl53

Awb: So great that you haven't had to have multiple biopsies done over these years....that's one of the things that scares me about this condition. And encouraging to hear that you haven't had lots of side effects from Tamox and Evista? That's the other thing that has me scared....I seem to be very sensitive to drugs - even over the counter cold meds and such.

Have also wondered how long after course of taking the drug it protects you....benefits conferred for years and years afterward? Keep wondering what a woman like me at 53 years old does for protection at that point.

One more thing: Do many LCIS women upgraded on excisional biopsy chose a PBM right then, rather than treating the cancer and then seeing if another one pops up?

MelissaDallas

Girl53, the survival rate is actually slightly higher with lumpectomy than mastectomy if you are diagnosed with cancer.

I will tell you that the few women with LCIS who continue to post on BCO tend to be the handful that have had PBX. That does not mean it is a representative sample. Most women who have it get on with their lives and don't hang out here. Frankly, it scared the crap out of me when I was diagnosed. It took a while for me to understand and make peace with the fact that this is not necessarily the norm or recommendation. In the absence of very significant additional risk factors, PBX is NOT the recommendation for LCIS. Even annual MRI is not

Girl53

Melissa: Thank you....that is good, and comforting, perspective. I am just scared to death with new dx, remembering myi grandmother's and my hubby's ordeals; and reading posts of PBM folks, etc. I have already discovered, too, that it pays to be careful who I talk to re: this....people tend to have strong feelings and opinions that frighten or sway me when I'm already confused and upset. Will try to keep sharing to a small group of intimates until more is known and doctor seen.

Is it typical for risk-reducing drug to be recommended for LCIS women, especially if you have risk factors like "heterogeneously dense" breast tissue, clustered microcalcs? Are there lots of women who pass on this option, and are fine?

Anonymous

MsVery Dense----they tell me I can stay on evista indefinitely,; (women take it indefinitely for osteoporosis.) I've tolerated both tamox and evista well overall with very minimal SEs.

Girl53-----supposedly, tamox is supposed to decrease your risk for another 5-10 years after you finish your 5 full year course of it. I don't know what percentage of women choose PBMs if their LCIS is "upgraded" to something more serious (DCIS or invasive bc); but it's said to occur in 15-30% of excisional biopsies; but keep in mind, that means nothing more serious is found in 70-85% of cases! (praying yours is one of those, as mine was).

anne

leaf

I agree with Melissa: only your genetics counselor can know for sure. (You may be too young to remember those Clairol commercials.) There are different tests that different docs or institutions or genetics counselors use different tools to estimate your risk of breast cancer. Usually they don't include cousins, but I've seen some calculators that do. Here are some:

http://www.afcri.upenn.edu/itacc/penn2/

http://www.cdc.gov/genomics/resources/diseases/bre...

http://www.myriadtests.com/app/provider/brca-risk-...

The reason why a genetics counselor is helpful is because some families are unusual: for example, there may only be sons in a generation, so they could not have ovarian cancer, and its much less likely those males would have breast cancer. In other families there is an 'only child'. So the estimation is not always 'cut and dry'. I imagine there must be more breast/ovarian/pancreatic cancer in very large families than small families because more people are at risk.

Girl53

Leaf: Thanks for the great information. My BRCA risk appears low using these tools. But I'm wondering whether, with LCIS/ALH, and a first- and second-degree relative with BC, my risk is pretty high anyway. Will see BS this coming Monday, and I'm pretty nervous. Am trying to stay busy but have prepared my questions for her. Now I'm hoping she can get me on surgical schedule fairly soon instead of waiting weeks or a month or more.

I've read that an ultra-healthy lifestyle can have some impact in reducing BC risk. My husband and I already eat pretty healthy and exercise regularly, but I'm thinking I'll need to step up my game even more. This can only be a good thing in early 50s...maybe it will help me steer clear of other diseases in addition to BC.

Am just feeling scared, angry, sad, and frustrated today. But I know this is normal and trying to be gentle with myself. Thanks again for great info.

Girl53

awb: Good to hear that tamox benefits last 5-10 years after cessation of treatment. And your doc said you could stay on Evista indefinitely?

Hoping excision will be clear. Is discomfort quite a bit worse after excisional biopsy than core needle? Have to avoid strenuous activities for several days? Boy do I want to get this overwith!

leaf

After I had my excisional biopsy, I couldn't jog for several days or a week (jiggling hurt, even with a sports bra). Jiggling (for me) didn't hurt as much with the core biopsies. It may also depend on how much they remove and nerves that are cut. For me, tiny ice packs were better than any pain meds. I went back to work 24 hours after my breast excision ended since they used anesthesia. If I had enough sick leave and had to do it again, I might take an additional day off.

I hear you - we all want to get it all behind us!

Anonymous

girl----new oncologist is not sure about evista indefinitely; but gyn and pcp and old oncologist said yes (because it is already being used indefinitely by women with osteoporosis). after my lumpectomy, I was wrapped snugly in a chest binder for 2 days, then allowed to remove and shower with the steri strips still on, I just took it easy for several days and was back to normal activities in less than a week. I used ice on and off and just tylenol.

Anne